'Time and space': carers' views about respite care

Abstract

The needs of carers have become more visible since the Carers Recognition & Service Act (1995). Although the demand for respite care is apparent it has proven much harder to establish its precise benefits using quantitative analysis. Some studies have shown no benefit at all to carers and the only clear benefit to emerge from more elaborate randomized controlled trials is a modest reduction in caregiver distress. Quantitative instruments may miss some of the benefits. We embarked on a qualitative study to determine what carers themselves said about the benefits or otherwise of respite care. Twenty-three carers were interviewed about their experiences of respite care and qualitative themes were derived from the transcripts of these semi-structured interviews. Caring was conceptualized in terms of costs (physical exhaustion, feelings of despair, lack of recognition and financial losses) and benefits (a sense of closeness to the dependant and enhanced self-esteem). Respite care emerged as a service that offered 'normality' and 'freedom' to the carer. Conversely, it was also perceived in critical terms if there was any shortfall between the quality of professional care compared to their own informal care. However high the quality of respite care, there was the uncomfortable realization by many that this care might be viewed as a signal to the patient, the family and the local community that they were no longer able to cope. Respite care was perceived as a service which, on balance, facilitated informal care and enabled care to continue at home for longer than would otherwise have been possible. The particular component of this service that was most valued was the option of a home-sitting service.